Acceptance and understanding: Sam Rader said that’s all he wants from the world.
For August, the 16-year-old boy from Lakewood says he’s making it his mission to raise awareness about his condition.
It’s called Spinal Muscular Atrophy. August is Spinal Muscular Atrophy Awareness month.
The disease is genetic and affects how his muscles grow. There are four different types, each has its own level of severity. Sam was diagnosed just before his first birthday. His mother, Susan Rader, said the diagnosis was life-altering.
“You don't ever expect it," Susan Radar said. "Someone just lays in your lap that you know there's no treatment, there's no cure, your child will eventually die from this disease.”
Sam Rader has started an FDA approved treatment called Spinraza or nusinursen. The company’s website says it treats infants, teenagers and even adults. Sam Rader said the treatment has helped him tremendously and he can hold up his head now. Sam Rader's parents, Susan and Shelby Rader, said they hope to see infant screening soon. They said the sooner SMA is detected, the sooner treatment can start.
As he heads into his junior year of high school, Sam Rader said he’s got a lot planned. He’s focused on friends and fun like most other kids his age. His main message is, he’s just like everyone else.
“All I ask for is for understanding and acceptance and your friendship, and compassion for people like me and people who are disabled, not hatred not anything like that, just be accepting," Sam Rader said.
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